Graves disease and Thyroid eye disease

[Jax1605]

Please can someone please help me as I am so confused. What do the thyroid antibody results mean ??? Also had anyone ever used CBD oil yo help with eye swelling and eye inflammation

[SlowDragon Administrator]

Have you been diagnosed with Graves' disease?

What medication are you taking

TSI or TRab antibodies should be tested to confirm Graves

TPO or TG antibodies can be raised due to Hashimoto's or Graves

Explains antibodies here

thyroiduk.org.uk/tuk/about_...

Have you got any blood test results and ranges you can add?

TSH, FT4 and FT3 plus very helpful to test vitamin D, folate, ferritin and B12

[Jax1605 in reply to SlowDragon]

Yes I have been diagnosed with graves in December. I am currently on 40mg of carbimazole 60 mgs of propranolol 50mcg of Levo and 200mcg of selenium

[Fruitandnutcase in reply to Jax1605]

Hi, I’m in remission from Graves. The timing of everything you’re doing and your medicines sounds very similar to my treatment.

It took me three months on carbimazole before I saw my endo then when I did I think I started on 25mcg carb - I was in my mid to late sixties back then.

I wasn’t able to take propranolol because I have asthma.

You’ll have read the link about thyroid antibodies which should make that clearer. I went totally gluten free a few years ago and that has massively reduced my antibodies, I don’t know if they would have gone on their own accord or if it was being GF that did it.

I had and still have extremely dry eyes. Actually I had them before I was found to have Graves‘ Disease and I’m sure it was all the same thing - just took a very long time to get my doctor to realise how ill I was - first one thought I was a hypochondriac!

I use preservative free eye drops very regularly throughout the day and that helps a lot, the more often I use them the better my eyes feel. I also use hot compresses and I have a thing called an eye bag that I heat in the microwave that helps swelling etc and just feels very nice.

It would be worth posting all of your blood test results on here and you should ask your doctors to test your B12, D, ferritin and floated, you want them to be well up in their ranges to help your thyroid. Also my pharmacist told me to take a high strength vitamin C when I started on carbimazole so I always took 1000mcg slow release vitamin C with zinc and I’d say I did pretty well on the treatment.

[Eyes-wide-shut]

Hi. I have Graves’ and TED. I don’t know if CBD oil would help with eye swelling and inflammation, but taking selenium is REALLY important and you may know that smoking makes it much worse.

TED is caused by the Graves antibodies, causing ‘fat’ to deposit into the eye area. It’s a separate but related condition to Graves’ disease.

Are you seeing an ophthalmologist ?

[Jax1605 in reply to Eyes-wide-shut]

Thank you both. Yes I am seeing an ophthalmologist. He has said I have severe TED disease. I'm seeing him again in may. He wants to give me 12 weeks of intravenous steroids.......I don't want to take them because of the side effects but my eyes are getting worse. So I read a lot of stuff on CBD oil.

[Eyes-wide-shut in reply to Jax1605]

I had the IV steroids and stopped after 8 weeks because of side effects. But in hindsight I think it helped. I’m currently trying ‘mushroom complex’ to reduce my Graves antibodies which are ‘off the scale’. The mushroom idea came from the book - Tired Thyroid. It’s early days so not sure if it’s helping. Let me know how you get in with CBD - and I’m so sorry to hear what you’re going though. I’m currently experiencing a flare-up and know how debilitating it is. I wish you well 🙏

[Jax1605 in reply to Eyes-wide-shut]

Yes it is so awful. I know I have a "thing " about conventional medications lol. I'm scared to try CBD also lol . Im a nurse which makes it even harder. I'm well aware of the money made in pharmaceuticals which makes me nervous also. Can I ask what side effects you got from steriods and how many times a week you got them. I was so gobsmacked by my diagnoses nothing he said went in.

[Eyes-wide-shut in reply to Jax1605]

The main side effects I had were pain in my tailbone so much so that it hurt to sit and kept me awake at night. I also had a terrible headache which felt like I had a tight band on my head that I couldn’t take off. But in addition to that my treatment schedule wasn’t great as both the ophthalmologist and endocrinologist weren’t around to speak to. It was over the summer in 2017. In hindsight I think it helped, by the October I was feeling much better, but my Graves has flared up again - August 2018. Still trying to figure out why. This time they are suggesting decompression eye surgery but I’m not keen. Is your vision compromised? I have double vision but my optic nerve is ok. Have you heard of the thyroid eye charitable trust? They are a national support charity and have lots of information. Please do pm me if I can be of any other help. 🙏

[Fruitandnutcase in reply to Jax1605]

I don’t blame you for being wary of steroids. I was prescribed a three month big dose but tapering off course of steroids for inflammatory arthritis and fortunately I was taking part in a pre diabetes study and went for my annual check up because I discovered I had developed T2 diabetes. I went on a low carb, high fat diet and was able to eat my way out of T2.

I was warned many times by the rheumatology staff that the hydroxychloroquine I was also prescribed could have serious effect on my eyes but no one mentioned T2 - if they had I would have told them I was taking part in the pre diabetes study. As it was the steroids had an amazing effect on the pain I was in but I really don’t know if I would want to take them again.

[Jax1605]

It's just all so confusing. I have tried to carry out my own research into treatments (which reading so much obviously causes me more eye pain) but there is so much for and against different treatments😫😫

[asiatic]

I was diagnosed Graves and TED 3years ago so understand how low you are probably feeling at the moment. My eyes slowly worsened over a year and I was offered steroid infusions which I refused which was the right decision as my eyes reach a plateau a month later and began to improve. Here is what I found helped :-

Essential to keep eyes well lubricated. When I was using drops over 6 times a day doc changed me to preservative free ones.

At night I used a thicker lubricant and an eye mask which kept my lids closed over the swollen eyes

I bought 2 small gel pads which I kept in the frig which helped to soothe eyes although sometimes I found it more comforting to use a hot mask heated in microwave. I did eye exercises. I don't know if they helped but made me feel I was doing something. Double vision was controlled with stick on lenses and I bought sun glasses that fitted over my glasses as any brightness really hurt . They were lovely red ones and hid my starey eyes. I was lucky enough that my opthalmologist prescribed IKERVIS drops which I used for a year. I believe it helped the dryness and allowed me to stop the continual need for lubricating drops and every little helps ! I hope your opthalmologist has a good knowledge of TED. Mine had a special interest and looked after me well testing every 4 months as my eye pressure increased and my colour vision changed. I thought my eyes would never improve but apart from a little double vision are almost back to normal. It just takes a while. Good luck.

[Jax1605 in reply to asiatic]

Can I ask how much selenium people take. I've been prescribed 200mcg but a lot of research states 400mvg daily

[Buddy195 Administrator in reply to asiatic]

I too have started with TED. Please could you tell me more about eye exercises. Thanks!

[asiatic in reply to Buddy195]

You will find many online e.g.

m-wikihow-com.cdn.ampprojec...?

At first my eye muscles were very tight. After 2 years I have regained much more movement. I do not know for sure if the exercises helped but I'd say it is worth a try especially the ones that involve the muscles involved in looking up, down, diagonal and to each side.

[asiatic in reply to Buddy195]

In case there is a problem finding the site I suggested here is another

artofliving.org/us-en/yoga/...

[Buddy195 Administrator in reply to asiatic]

Many thanks for this asiatic. Second link worked. I will try anything to help eyes improve!

[asiatic]

I was not prescribed selenium only advised to take it. I bought it from Holland and Barret 200mcg. I posted a question here as they sold one that said absorbable suggesting the other might not be which made no sense till it was explained on here. You should be able to look back and find post. I take the more expensive version now.

[Jax1605 in reply to asiatic]

Thank you. I have been prescribed it by opthamolgist who is very good and has a personal interest in TED which helps

[Jax1605]

Thank you all so much. Other question lol. Apparently my vision is perfect so I don't need prescription glasses. My problem is severe sensitivity to sun ligjt and florescent light in work. I am trying to sources glasses with light reacting lens but they all asking what my prescription is 😥 I only need the light changing lens .

[bantam12 in reply to Jax1605]

Opticians can make up plain lense photochromic or transition glasses, my husband enquired but in the end he bought some online.

[Jax1605 in reply to bantam12]

Thank you. Would you know what web sight he used. They are all asking for my prescription 😥

[bantam12]

He can't remember which site he got them from but Specsavers were happy to do non prescription photochromic for him.

[Jax1605 in reply to bantam12]

Ok thank u anyway. I will keep looking